Night time comes with a vengance for me. It is a lonely time. It is full of thoughts of what didn't get done today and what needs to be done tomorrow. What can wait until later, what should be done next. I feel like I am trying to keep my head above water to get pushed back down from the reality that I am only one person trying to do the job of three people. I know I have only made it this far with the Lord's help. I have only made it this far because I have asked for help. I am tired and I am weary. I am anxious and I am lonely. I am trying so hard and failing. I need more hands, I need more brains, I need more, I need. I don't even know what to ask for in help because nothing seems to be helpful. I am grateful that everyone wants to help. I am tired of being strong and I am tired of holding it together. I want to hide. I want to run.
My husband asked me tonight if I had one day alone, no kids, no reponsibility what would I do? I just don't know. I just don't know what to enjoy, I don't know where to go. I have no good friends any more to spend time with, I have no hobbies, I slowly am loosing myself in a world of uncertainties.

A seat for Keian

Thanks to Grandpa we have gotten a chair of our own. This chair came with a wonderful toy that Keian really loves. Thanks Grandpa!

10 things you may not know about me

1. I have this thing about people reading over my shoulder. I hate it! You can read what I wrote, I don't care just don't do it over my shoulder.

2. I hate sharing drinks even with my husband. Yeah I know I kiss the guy full on the mouth but it just grosses me out to share a glass or a bottle of something.

3. I have this fear of vampires in my closet. I have ever since I was a child. As an adult I know they are not real but every once in a while I have a dream about one in my closet and wake up all scared.

4. I have no feeling in my middle toe on my right foot. I also do not have the reflex of when you hit the nerve in your ankle and it is supposed to jump. Ever since I herniated a disc in my back I have had these things wrong.

5. Sometimes I dream of going to India to study yoga and meditation for a month. I know this will not happen until my children are grown and may not happen at all but it is still a dream of mine.

6. It would not bother me to give up watching TV but it would bother me not to have the internet. I feel connected to the world through the internet.

7. I do not believe in global warming. I think the earth goes through phases. It went through and Ice Age and it warmed up. It rained for 40 days and it dried up. I think the world is going to warm up and the earth will catch on fire all over the world.

8. I tend to think that most people are stupid. They get all upset over nothing and bent out of shape over nothing. In the big scheme of things holding grudges and being mean to people only comes back to bite you in the ass. Forgive and forget...It may not be easy but doing it makes your life easier.

9. If I could change my life and do things over again the only thing I would change would be to finish school early.

10. I have a thing for Sylvester Stalone. He was hot in the Rocky movies!

Who will be right?

I can't help but feel excited today. Excited for both of my sisters who are going to have babies. Laura is going to go any time. My bet is on the 26th. She thinks she will on 22nd or 23rd. We will see!

Laughing baby

Isn't this the cutest thing??Laughing baby!

A backwards life

Last night I read something very interesting that made me think. The problem with most people is that they go about life backwards. They should be living and being who they are, doing what they need to do and then the treasures of the world will come to them.
So true! Many people go looking for treasure and seek out the wrong things in life. If we continue on a path to only seek out money then we will be miserable. We get lost in who we are and forget to be that person.

Jessica...not that innocent!

A new style for Jessica

As many of you do not know, Jessica got gum in her hair this weekend and we had to get it cut off. She loved going to get her hair cut and said thank you for my new hair. I have to admit she looks cute! Here she is showing off her new do.

More news

The other shoe dropped! Not about Keian but about me. I got a call from my rhumatologist this morning. She has been researching the last 3 days. Something to her seemed familar when I was talking about my dad's symptoms and my own. She has been searching for some notes she took a long long time ago. I am going to see a neurologist. I don't know if I should be excited that it is not Lupus or sad that the aches and pains will get worse.

I have been to the extreme already. Not being able to use my hands or walk. That was a couple years ago. It got better. I refuse to let this beat my spirit! I am strong and I can get a long just fine. I have already found ways to cope. It is just a matter of finding more ways to cope. I am not any worse off than I was a few days ago. No matter what the doctors tell me this has always been there.

Keian had an evaluation this morning. We had a sight teacher come to visit. He is doing well for his "age." (If you adjust him to his developmental age which is about 3 months) We will be having another person come to visit us reguarly by the end of the month. This is for feedings. We are going to start working on eating by mouth. He is not nearly coordinated I think to eat solids but they say he is and that the calories will do him some good.

Awake in the night

I am up. 1 am and I am up again. I think it is the worried me setting in. Things are going great and I am worried. About what? I don't know but I am anxious and I am worried. I think I thrive on drama and things going bad these days. Something to do other than the daily nothingness of everyday life. As things settle down in life I feel an uneasiness. It could be that I am not use to having no one to really talk ot. It could be that I am so use to being out there in the world working on something. It could just be my nerves at one in the morning shouting at me to get off the computer and go to bed.
I realize that I have not had a best friend in a long long time. Someone that gets me and someone that no matter what crazy things I do they will always love me and they will always call me their best friend. I think I am too high maitenance for most people and I tend to choose people that are too high matienance for me. I look back at the last time I had a real best friend and it was when I was something like 10. Beth. I still call Beth at times. She has turned into the person I never want to be. Single, smoker, drinker. Divorced two times. She married loosers she met in a bar. The same bar! Go figure things didn't work out. She is strong though. She knew she didn't want to be a mother and never had kids. She is understanding and never judges me still to this day, but we come from such different lives now and she does not get me anymore.
Some say I should turn to my husband in this. He has his own problems that dealing with my darkness at times is too much for him and he turns and runs. I don't blame him. I run from his. We don't get eachother and I don't think we ever will but that is what makes us work. We love eachother in the good and bad times but we don't get eachother. For example I don't get why he can't take pills to get over the physical pain and he doesn't get why I do. I guess neither way is bad but neither of us gets why.
I am reading the best book these day.Eat, Pray, Love by Elizabeth Gilbert. Many people could be offended by her interpretation of God and religious things. Be open I say and read it. It is a really good book about her journey through life.

thoughts

I cannot write. I have sat here with my journal for the past 30 minutes thinking that I need to update things. I am dead. Not literally but my mind has fogged over so badly I feel like there is nothing in there. Is it the headache or is it the lack of energy I feel? I don't know and it hurts to think about it. I am tired. Very tired. My hands hurt but I refuse to let my aches and pains get to me and take over my life and rob me of the pure enjoyment I get from writing.

A good friend of mine tells me I should write a book. I agree but I am as unfocused as a 3 year old on a caffeine. I know I am destined to write something other than journals and this blog. I know that one day I will definitely be looking down at a book I have written, but about what?

Keian is doing well. I have some fears that he will not get better when it comes to his muscles. Some days I think wow he is getting so much bigger and he is trying so hard to do things but he is not getting better when it comes to his neck. Day after day we work on his neck and day after day I think are we doing this in vain?

Kyle is getting bigger and bigger. I can tell he is resentful of the fact that his sister and brother get so much attention. I think he is diluted in thinking that his mother will come back to his father. He asked me today why I left his dad. He told me his dad said it was because I wanted to be with someone else. Poor kid. It wasn't that I wanted someone else, it was that the way both of us dealt with each other had become so toxic that there was no point in me staying. I had changed EVERYTHING about me for him. I changed my belief system and everything to please his father and to make him "love" me the way I wanted him to. He never knew what love was until Kyle came along. He never knew how to accept someone that was different from him and still love all the differences as much as the similarities. He wanted a clone. He wanted what his parents wanted for him and not what was really in his heart.

Don't get me wrong, Kyle's father was not a bad guy. He was never evil and he was never abusive. He loved his child as much as any good parent does. He just didn't know how to love a partner. I feel sorry for him in that he will ALWAYS be under his mother's thumb. Her opinion will matter way too much to him. He will always choose her over his partner. He will never know what it is like to truly have someone on his side that is his equal.

Jessica is suffering. She too is feeling the loss of a parent. Lee is gone so much working these days she is having such a hard time with it. I see the difference in her when he is around. So much less wound up and able to just relax. I can not wait until hop season is over. I will be glad to have my husband back.

We all need to be free to live!

We all need to be free to live!

The need to keep going

I sit here in the dark thinking and wishing I had more of a purpose. I wish I was more than just a mother. Why is there always the endless loads of laundry and why is there always messes to pick up? I want to scream out and take life by the hand again instead of it taking me kicking and screaming down a side street to rob me of my youth. The price we pay to be a mother! I think my youngest says it best in this picture! To look at his perfect little face you would think there is nothing wrong with him. He is a sweet little 3 month old. I can't believe he is almost 9 months now. He should be crawling! He should be sitting! Poor baby can't even roll over and eats from a tube in his stomach. I sometimes wish I could take it all away. I wish he was normal so he could run and jump and play and bug his brother and sister. I wish he could steal their toys and bang on pots and pans in the cupboard by the stove. I pray he can eat cake on his first birthday and will be able to sit up while we sing happy birthday. I hope one day he will grow! I keep going for him. I keep praying for him. I keep loving for him. I keep hoping for him. I keep living for him.

Today we had our good friend Carla come over. She is Keian's physical therapist. She brought us a little tool to use for the week-a little chair. Keian loves it! He sat in it for about 15 minutes this afternoon. Here is a link to see what the seat looks like. We are definately getting one of these for Keian one way or another. It is good therapy for him and the perfect size considering he is so small compared to most babies his age.
http://www.activeforever.com/p-1835-prince-lionheart-bebe-pod-plus-baby-seat.aspx

Things are going so well with Keian I can't help but feel a little uneasy. I'm feeling like when will the other shoe drop.
We ran into a friend today and she made the comment that Keian finally looks like a newborn and not a premie. I know what she means. In physical therapy we are working on sitting upright with Keian. To me is seems strange to see such a small small kid trying to sit upright. He is ready for it though. He seems so much happier these days. Yesterday he giggled all day long when anyone touched him or looked at him. Keian is also starting to enjoy having Jessica around. He trys so hard to get her to interact with him. When she does he just beams!!!! It is so nice to see them finally spending time with eachother.

another

another
Originally uploaded by Rosie O'Donnell

I love this work! Rosie, you have truely out done yourself! I am looking at this peice and it is giving me the inspiration to just keep going. Why? I see the utter chaos that is in my life as well as someone elses and think to myself, If she can get through the depression so can I. What makes her better and stronger than me? Nothing. It is the desire to be a better person and live your life the way that makes you and those closest to you happy.
If you are reading this Rosie I just want to tell you, YOU ROCK!!! You have given me the inspiration to be myself and live my life the way I want to not the way that society or my old fashioned parents think I should.

Yesterday we had our dietician come over to update calories and weigh and measure. To my surprise and hers Keian has gained 2 lbs., grown 3cm! His head circumference has grown 1cm and this has just been in the last month! Keian is starting to get big and very quickly. It is amazing what happens when they actually keep food down!

We had a doctor appointment today. Keian has gained nearly two pounds since his surgery!!! He really is starting to fill out his little cheeks. Even the doctor was amazed at how good he looks. We finally have the ok to start bringing him out in public more since most of the worry is gone of him getting colds. This means we finally get to start going to church together as a family again!!!!

Keian is doing very well! He is also teething! We have finally got one tooth almost through! Its just a matter of time before he will have a full set of chompers. Today was a great day to get out of the house. After putting Jessica on the bus we walked to Albertsons to get a few things. There we saw Karen McDonald and got to visit for a little while. We also got to show off a little for the employees who have all heard a lot about Keian but have yet to see him. It is nice getting out and we are going to try and do it a little more often.

Keian is doing great!!! I added some photos of him from the hospital. Check out how many tubes and cords are comming out of him. Most of them are hidden and can't be seen.

We are coming home tomorrow!!!!! Yeah!!!! Keian is doing wonderfully and only on tylenol with codeine for pain. He can take that by mouth so we are able to go home. Today we have an appointment with Urology that was scheduled previous to surgery.
It looks like Uncle Jared (my brother) is going to take us home tomorrow. He decided to take Aunt Lonnelle on a little vacation to his house and is going down just in time for us to catch a ride. It will be a much nicer ride than going in the Medstar Van which made me car sick the way the kid drove.
I was hoping to post some new pictures however my computer and camera are not cooperating. So I gave up until I get home!

I just had the worst scare of my life! Nothing bad happened but none the less scary. Here is the story. So I just had gotten back from using the bathroom and went over to Keians bed. I looked down and see this large pool of blood next to his head! He had pulled out his IV, which they had put in his scalp. I quickly grabbed some gauze they have sitting here and called the nurses. Everything was ok and Keian was fine. It really wasn't that much blood it just looked like a lot since the blankets had soaked it all up. I never want to see that again though. My heart can't take all the excitement.
Keian is doing really well. He is still on a morphine drip and we are trying to get a bowl movement out of him. He was given a laxative this morning and hoepfully it will be working soon. I'm sure he will feel a lot better once he's had one. He is in good spirits though. He's been spitting at the nurses and doctors every time they come to see him. That little trick was taught to him by his dad when he was in the hospital last. You just can't leave dads alone with the kids!

Last night was pretty bad for poor Keian. He was up every two hours screaming. Mainly because ever time the nurses came into to do vital checks he's get mad. They ended up giving him more pain meds. I of course did not get much sleep either. Everytime he would scream he wouldn't stop and I had to get up and calm him down. That's ok though because thats what mothers are for.
The doctors were in and told me that they are starting him on food this morining. We are starting on Pedialyte and if its tolerated we will get formula. Lucky for him the NG-tube goes into the intestine instead of the stomach and it will bypass all of the surgery site and give it a chance to heal before we use the G-tube.
So far everything is going great other than his pain not seeming to be completely under control. It may just be his cranky though and doesn't want to be bugged. Then when he drops his pacifier he really gets mad since that is his only comfort item right now.

So far so good. Keian is doing great so far. He is still in a little pain tonight. He keeps waking up and lets out a few screams. The nurse is contacting pain management services for us as he can't have more morphine and its another 2 hours until he can have more tylenol. He's a trooper though. They have him hooked up to all sorts of stuff tonight. An IV with fluids and a morphine drip, the heart monitor, oxegen status monitor. Then he has his gtube draining stomach acid and the NG-tube still in because the Gtube is not usable for a week. SO he looks like a mess. Hopefully he will start eating tomorrow through his NG-tube and then we can get rid of the IV. I think they will keep the IV for the duration of our stay. So that will be another machine to be hooked up on. Well time for bed. I really need some sleep.

So far so good! Keian has been back there for an hour and a half. I'm not as emotional of a wreck as I thought I would be. I think it's due to my brother messing with all the nurses around here. One nurse asked if there was anything she could do to make us more comfortable. He answered yeah can you rub my feet. We all had a good laugh over that one. He's been a great help to me to stay calm. I'm doing well and trying to keep busy checking my emails and all that. So more to come later tonight.

Ok 5 1/2 hours and counting! I'm up early. I haven't been able to sleep the past couple days. I think Satan is trying to break me because I have had one obstacle after another the past couple days. I am tired and I am scared! Who wouldn't be though right? I mean they are cutting into my baby. I don't think I have ever felt this scared in my life other than when I was 9 and I thought there was a vampire in my closet, but that doesn't count. It helps knowing my brother Jared is meeting me up at the hospital. I don't think I would make it through without the support from him today. It is very humbling and very hard to realize to let the Lord's will be done. Letting everything go and saying its up to you, Father. I leave this in your hands. This is the first time I've actually knelt in prayer in 3 years because of pain in my knees. I think it means so much more to me and I start to realize what Jesus did for me and my son. How he suffered for us. Thank you all for the help you've given us over the past few months. I am so thankful for a loving ward who honestly shows concern and wants to help as much as possible. I'm glad that they are not there just because it should be done but because they have such love in their hearts for my family. I make a promise to all that have helped me that one day I will repay your loving kindness by passing on the same love and concern and help to someone else.

One day and counting! We are almost ready to go. We almost had another hospitalization last night. Keain went to the hospital by ambulance for non stop throwing up and getting some in his lungs. The ER doctor didn't see it necessary to admit him since he was going to go to have surgery on Friday and we want to keep him well. The hospital is not the place to be because there is an increase risk for colds. His chest x-ray looked good last night and I was told to watch him closely for the next 48 hours until he goes in for surgery. I'm sure he will be just fine. Wish us luck it is going to be a long few days in the hospital. I will have my laptop and will update on Keian's progress during that time. Hopefully I will also be able to get a few pictures downloaded also while I am there.

The big day is getting closer and closer. I of course am geting more and more nervous. I am glad my brother Jared is comming to the hospital to be with me during surgery. I of course would be just one big mess and talking over the internet to anyone that would listen if it were not for him. I have been through surgery myself and have always thought oh no big deal! However when it is your own child a huge monkey wrench is being thrown into the pot. The what ifs keep creeping in my head and its all I can do to not dwell in them. People tell me I am the strongest person they know. I don't think I am that strong. I do what I have to do to survive and to take care of my children. I have made a lot of mistakes in my life over the years. Some of you know and some of you would be surprised but it all comes down to one thing. That thing is the gospel of Jesus Christ. I am trying and that is what counts. I am doing what I can and relying on him because that is what big brothers are there for. I am glad I have had the trials I have had. I am glad I never sat back and decided not to test my limits and grow like others do and end up having a midlife crisis. (I got mine over by 25) I sometimes wish I could do it all over again. There are only a few things I would change.

Keian is back from the hospital. He is doing fine! He's even gaining weight again with the new tube they gave him. I'm sure we will see a huge difference after surgery.
Lee started his second job this week so we are pretty much all alone for the next couple months. We miss him already but we need the money and the job is pretty easy. He's just on call all evening.

Keian is in the hospital again! We had a new tube put in that was supposed to keep him from throwing up. The tube is almost the same as before it just has a weight at the end so it will move into the upper intestine. We were hoping that this would keep the stomach from getting full and Keian would be at lower risk for aspiration. It looks like this is just no the case.
Last night around 4 pm Keian I was giving Keian a sponge bath and getting ready for an outing later that night. My mom, uncle, older sister Lisa and brother Jared all were in town. This was the first time we had gotten the entire family together in a few years. I had just finished bathing Keian and he had on only a diaper. Without any warning what so ever Keian starting throwing up. This time it was just stomach acid. The worst part was that he definitely aspirated again. Once while he threw up he also inhaled at the same time. His lungs sounded horrible and I called his doctor while suctioning him out and keeping his air way clear. She wanted me to bring him in once he stopped and I was able to give him a breathing treatment. However he wasn't stopping throwing up. I didn't trust taking him in the car since he needed to be in a car seat and his doctors office was across town. So I called for an ambulance to take him to the emergency room. Once he got a breathing treatment at the hospital he sounded so much better.
So he is staying over the weekend. The doctors don't want to release him until he definitely is keeping things down since he now is throwing up without warning. At least when there was stuff in his stomach he started gurgling and I could tell he would have a problem if I didn't do something. I'm at the point that I want the surgery pushed through if he doesn't develop any problems with the lungs. My biggest worry is that he is going to get pneumonia before he gets the chance to have surgery. I will discuss this with the doctor once we know there will be no problems. May be it might be the best thing for Keian.

Stress

I am dealing wonderfully with stress. All I can say is that vitamins help! These days my life seems to be all about stress. I have a 7 month old baby that has a rare genetic disorder. I have a 3 year old daughter who is starting preschool in a couple weeks. I am fighting with my ex husband for visitation rights for my 8 year old son. My ex doesn't want me seeing him. My husband got hit in the head with a 40ft steel beam 10 years ago and is dealing with anger and depression issues realted to a close head injury. Not to mention his back wich hurts him all the time. I have stress in my life! The one thing that has been helping me though is knowing that I can manage it all.
My husband asked me this morning why I can't stay angry at people. I told him it takes so much more energy out of me and that my energy is better served being kind and forgiving to people. It is true. Being angry takes so much more energy that letting things go and and getting on mith my life.

Here is a link about the proceedure Keian is having in conjuction with having a Gtube placed in his stomache. This should answer many questions some of you may have. They tell me with as small as Keian is and the many problems that are ongoing with him he will definately have to stay 5 days instead of 3. They want to make especially sure that he is ok to go home home over the moutains.
http://www.webmd.com/heartburn-gerd/Fundoplication-surgery-for-gastroesophageal-reflux-disease-GERD

The last two days have been crazy!! Last night I got a call from Keian's pediatrician. She told me they were cancelling the procedure they had scheduled for Tuesday because I had an appointment in Seattle and they may end up doing the needed surgury for the Gtube right away. I had 14 hours to find a way up to Seattle as no one called to tell me that the appointment had been moved up.
So we went to Seattle today. I want to thank those that helped out! I would not have been able to go if it not for all of you.
We scheduled surgury for September 14th. I will need to spend 5 days in Seattle. We are also having a proceedure done that will keep Keian from Refluxing anymore. They will turn his stomache around the esophagus. This will keep him from bringing anything up.

Well I got some good news from my doctor today! We found out that Keian can have his NG tube pushed down into the small intestine until we can get the surgury done! This is good new as we won't have to worry about aspiration as much. We will be doing the proceedure tomorrow as needs to be done under x-ray so they know where to place the thing. I am also leaving for Seattle next week. I am hoping they will be able to do the surgury right away. It would definately be a blessing if it all worked out that way.

I am very thankful for my memory today. God has blessed me with an amazing memory. Some days it seems shot and I have a hard time recalling people's names. However when I can recal details of things that have happened nearly 18 years ago, I know it is a blessing from God.
Keian seems to be doing better today although I can tell the reflux is a bit of a problem. We have an appointment in Seattle on September 4tth for a consultation on the Gtube. we already decided on it and I think it is ridiculous that they won't schedual the surgury now so I can plan for it. I am going to try to have the surgury done the week of the 17th since we have to go up again for more appointments. Hopefully this tube will fix all the problems the NGtube is causing and we can stay out of the hospital from now on.

Well if you did not know we were back in the hospital. We are now home and everything is fine. However Tuesday morning scared the bajebies out me and Lee. Keian Aspirated at about 3 am. I heard him and immediately got up and started suctioning him. He usually recovers on his own and everything is usually fine. This time was different. I had to give him mouth to mouth breaths because he was not breathing. We called an abulance but luckily before they got there he was doing better and breathing on his own. I'm so glad I took CPR training for infants even though it was like 18 years ago. I took it as a teenager when I was babysitting regularly. My school offered a babysitting class that included infant and child CPR. I never thought I would ever have to use it let alone on my own child. I know the Lord was with me giving me the hints on what to do becasue I can't believe I was so calm through it all. I think I was more scared when Keain was having seizures from low blood sugar. The doctors are agreeing with me that we need to get his GTube done right away. Keian's pediatrician is trying to get it pushed through as soon as possible. He does so much better without the tube in his nose as far as aspiration goes but it will be at least 6 months more before he can totally sustain himself with solid foods. He is now 11 lbs 1 oz wich is wonderful, but he needs to be 13 pounds before they really want to push the solid foods. If he continues the way he has with growth over the last three months it is going to be 6 months before he gets there. That is just too long to have that tube down his nose. Plus we want to do it before cold and flu season or else we will definately be stuck at home all the time. I want to tell Granny and Mom thanks for all the help with Jessica. It has been nice having my mother here to help out. I wish you were in town more often. I can't wait for my sister Lisa and her husband to get here. We all have missed them and are looking forward to the big get together next week. Well all for now, I'm going to spend some much needed time with Jessica.

Grandma comes today!!!!! We are very excited to be having my mother visit. This is the very first time that she will get to see Keian in person.
Keian is doing very well lately although we are keeping him away from people as much as possible until he has his gtube put in his stomach. We don't want any colds and we are washing our hands like crazy.
We want to congratulate our friend Jean on going to the temple for the first time on Saturday. We are all so proud of you!!! I wish we could have been there.
Well all for now. We have lots to get done today.

Sorry it's been a while! My father has come to visit and it has been wonderful getting some one on one time with him. Normally I have to fight my other brothers and sisters for attention. Not that we actually fight...hehehe. Anyway Keian has been doing well although we are still battling reflux and aspiration issues. I think a permanent G-tube is our best solution and to have it done before October.
I am looking forward to my mom and sister comming to visit soon. Hopefully we will get a sister's night out and get to spend time without the kids.

Things are looking up! Yeah we finally got the test results of our emergency room visit this past weekend. The bladder infection is gone and not back!!! That's good. Nothing grew on the culture they took so I don't have to keep Keian on lots of antibiotics. He only will get one dose now instead of two. May be it was just the shots that gave him duch a high fever but it should not have been that high. I'm glad I took him in anyway to be on the safe side.
I want to thank who ever it was that left cookies on the door the other night! What a great little treat for the kids. They were so excited that we have a pixie leaving little gifts for them at the door. They really loved opening the door to find only cookies and no one standing there. The devoured them in minutes!
So Lee and I have decided that we want to get Keian a permanent G-tube put in. He has had so many problems just with having a cold I think it may be for the best. I don't really want to put him through it but I'm thinking it may be better for him in the long run. I think it may be at least 6 months before he will get totally off of formula as his primary source of nutrients. From the sound of the physical therapist it probably will be a while before he can coordinate sitting on his own without support.
I can't believe he is almost 7 months old. These past months have gone by so quick! My hope is that he will grow stronger and eventually be a normal boy. We joke around that he is our little Pinocchio. Yesterday we had a counselor visit our home. Lee really isn't in to it but I really hope he can embrace the support that is there for him. He is finally doing better with the stress but I have to admitt that the stress has gotten better too. I really liked the counselor myself. Her name is Kayla and she is expecting her first child. It was really nice to just talk to someone who wanted to listen to all of my ramblings. Yeah I know she's paid to listen but its been a while since I've done any therapy and it was nice to hear that I'm just a normal mother with normal fears for her child and everything I'm going through isn't ridiculous. In other words I'm not mentally messed up and shouldn't spend years in therapy to get over something. Sometimes I've wondered if I'm slowly going crazy or if its just the stress.
On another note I found out I am severly lacking in vitamin B. I also found that this could be the cause of a lot of my problems. I did not know that it would cause enemia and aches and pains from lack of oxygen from the anemia. I have started on a strict vitamin regimen. I should see results within two weeks. If not its back to the doctor for me for shots. I'm not expecting to be totally pain free as a lot of my back pain is from athritis in my back but maybe I wo't be feeling so tired all the time anymore.

The antibiotics are working. Keian no longer has a fever. Although he is teething and I'm sure in pain from that. He is drooling like a dog lately. Yesterday was nice to go to relief sociaty. There was so much comfort in being with friends and it felt like family.
We had a lesson on adversaty which was really a needed thing for me to hear. The one thing that stuck out in my mind is that the gospel is a resource when adversaty strikes. This is so true! There is so much comfort in knowing that the Lord truely is on your side and that no matter what Keian will be ok.
I spent the rest of the day resting as dad took care of Keian for me. I needed the rest! I feel much better and ready to face the week ahead. Tomorrow we go to Seattle for and EEG and to see the endocronologist. An EEG is a neurological test and the endocronologist is for his blood sugar dropping. We are leaving very early in the morning this time. We have to be on the road at 4am so I will be going to bed early early tonight because I am taking first shift in driving.

Its 4am and I can not sleep after a trip to the emergency room and diet doctor pepper to keep me awake. Keian woke up with another really high fever. We found out his bladder infection is back. He never should have been put on amoxicillin. Anyway at least he dosen't have to be hospitalized over night. We started him back the original antibiotics he was on and are giving him tylenol for the fever. They want him to go into the clinic on Monday to follow up however I think since we are going to Seattle on Tuesday they will let it slide for the time being. I will just follow up with the doctor over the phone. On top of everything else I really don't want him exposed to another cold or something if we can help it. Well since I'm starting to get tired I might as well try to get some sleep to keep myself going.

Yesterday we went to see the doctor. Time for 6 month shots. I also discussed with Keain's doctor about flu season comming and getting flu shots. This will be the first time for flu shots. I need to have one as well as the kids. I also found out that Keian will be given a series of vacines for RSV this year. The cost is astronomical!!! I'm so glad that he qualifies for the state insurance because his doctor bills have got to be horribly high. This vaccine for RSV is $800 for one dose. Keain will have to have it once a month from December to May!!!! I guess it takes a lot of paperwork to get this vaccine and I'm thankful the doctors are the ones that do it.
Last night I was able to get out of the house for a few hours with a friend. We went to Outback and got their sinful sundaes. Let me tell you they are SINFUL! Then we went shopping for some things at Walmart. Although I was doing errands most of the time it was nice to just get out with no kids and have some adult conversation.

The 16 and 17 year old girls came to our house last night and cleaned! Boy what an improvement in our spirits around here. They were such sweet girls too. It made me miss working with the youth. I know that I have another calling right now though.Keian needs me more than ever.
I now see how the Lord works in all things. I realized today why Jessica was so head strong and indepedant. If she weren't she'd never survive in this house. She gets herself water and doesn't want help in the bathroom. She turns on th TV herself. Kyle wasn't like that at her age at all. He's finally starting to get that way. Only because we've pushed him.
Well I better get back to organizing the house.

We are back from the hospital tonight. Finally I have some quiet time to reflect. Lee is a nervous wreck and I worry about him as much as Keian. He is not coping well and getting sick again. I keep telling him he needs to take his medications like the doctors tell him to or he will just feel worse. In case you don't know he suffers from depression from a hit to the head. Let's just keep that between us...hahaha..he'd kill me if he knew I was writing this on here. I have decided not to with hold all the juck in our lives and make this prettier than it seems. I am keeping this for Keian too so he can know what he went through and what I am going through too when he gets older.
I am doing surprisingly well through all of this. Yes its hard with my many health concerns too but emotionally I think I need to be a rock for Lee. Not to say that I don't break down but I want him to realize I am there for him and I have faith Keain will be just fine. He really really needs that.
So we know have a suction machine, a nebulizer and a pump for feeding Keian. Looks like the doctor is going to add on an apnea machine for at night so if he aspirates we will know right away.
My house is a disaster! Being gone for 2 1/2 weeks in the hospital or appointments has really taken a toll on the house. The 16 and 17 year old girls are comming over to help me clean tonight. Some of them are going to help out with Jessica here at the house. It really will be nice to have an extra set of hands for her. She has been trying to make her own cookies lately. She gets out the prepackaged mixes a stick of butter and eggs and starts mixing it together. I really should post some more pictures of the kids. I know some of you don't get to see them very often.
I so appreciate all of the words of encouragement! I will be showing them to Lee. If you aren't leaving messages in the guest book please please do. If that is the only way you can help out. I appreciate the support and really need it right now.

It looks like we are back in the hospital for the night! Keian has been getting a cold again. For those of you don't know this means a lot of coughing and a possibly reflux and possible aspiration. Thats what happened today. He has been wheezing and since it happened so hopefully no pnemonia. We have been very lucky so far! I did convince his doctor that we needed to go home with a suction machine this time to try and prevent this from happening. Finally the doctor agreed! So I am off for a stay at the hospital tonight and hopefully be out tomorrow morning!

I am exahsted! The never ending doctor appointments and the never ending needs of Keian are wearing me down. I just feel a little discouraged that there really isn't any help around with family. Sure I have my brother and two sisters here but they have lives of their own and families to take care of too. I have decided to look into respite care for Keian. Once he is approved for Social Security it should be paid for. I have an appointment about it in two weeks. I'm hoping until then maybe DSHS can help with it. I don't know though.
Last night was kind of bad and the fact that I am trying to keep a cold at bay is not helping. Keian last night started refluxing again. When he does this he starts choking on his spit and turning blue. He has to be watched like a hawk when this happens. I know his meds need to be adjusted. I talked to the pharmicist and she gave me a few suggested to talk to his doctor about.
I am down but I am thankful for my best friends the Waywells. They have been a true blessing through all of this. I can call them at a moments notice and they are there for me like family. I am also thankful for my children. Their smiles are what keeps me going. I love hearing Jessica come up to me and say,"Mom, I love you!" I love seeing Kyle so concerned about his brother's welfare. He has such a sweet heart about him. I love seeing Keian laugh and trying so hard to talk. The best things in the world are seeing your children grow up. I can't believe that they are all that I will be able have here on this earth. If my body could have taken it I would have had six more. I am thankful for my religion and knowing that know what happens with Keian, he is in the Lord's hands. I am thankful for a ward that steps in and helps out no matter what is asked of them. They are truely a blessing when it comes to this family. We would have never survived without the loving support, meals and advice given by our leaders. I am thankful for our home teacher that is so devoted to us that he will make it every month even if it is on the last day. I am thankful for our Preisthood leaders who have helped my husband cope with the stress of everything. I am thankful for the men who have come to give my son or me a blessing. I am thankful for the missionaries who come to our home and bring in the joy and spirt of the Lord. I am thankful they drag my husband out with them to teach the gospel to those that really need it in their live. I love seeing their hopefulness of life and newness of adulthood to make their own decisions. I love to see them growing spiritually and being an example to me to read and study the scriptures.
I am thankful for the mothers in out ward who step up and help out with Jessica when I just need a small break. I am thankful for the friends that I can call at a moments notice and say I need help!
Ok now I feel a lot better and not so discouraged with everything.

Today has been rough! Man I could sometimes spend two whole days on the phone making appointments and coordinating appointments for Keian. We have been back and fourth between the doctors trying to convince the schedualers that I can't drive up to Seattle 3 times in a week or even stay there for a week. On top of all that his primary care physician decided to change doctors for his kidney to one in Seattle. Now I get to squeeze in another consult to an already busy day on August 7th. It looks like he may end up doing his EEG and the test for his kidney that day also.
Keian has been so vocal the last couple days. He is using a lot of AHHHs lately. He doesn't differetiate between many consanents. He has done G and D so far. Hopefully I am just being a worried mother and he doesn't have problems with hearing.
His little braces are halping quite a bit with his hands. I have noticed lately Keian does not use his thumbs much. It is suprising to me how inventive he is with his hands to get his pacifier back in his mouth.
Today was also a day to sart feeding rice cereal and not through a bottle. Keian has had it before but never from a spoon. I don't think he ever really tasted it. He seemed to like it since it was mixed with Bananas. He didn't eat much of it but that's ok. I just want him to get use to puting food in his mouth since he doesn't take from a bottle well at all. Maybe I can transition him to solids easily and give him liquids through his NG tube. I do need to get him over the sucking air thing though. Eventually he will need fluids taken by mouth is I am ever to get rid of the NG tube. Maybe a sippy cup will help but he's no where near coordinated yet.
I heard from Social Security today. The lady said that they wanted more info on the doctors and stuff that has happened in the last four months. She said that they were leaning towards denying him but with more information we should be able to get things approved. This could be a huge step for us! It may allow for us to go back to Utah to be near Lee's family. If he is approved we then can get medicare for him on top of any other insurance. This would then pay for any extra things that we could not afford if we were to move to Utah.
Things seem to be looking up. I'm glad we have the Lord in our lives. He has been a comfort through all of this.

Keian said his first word!!!! Ok it was a couple days ago but I've had a lot to do and so on. He repeated me when I said DADA. Do he's said something. His speach is a little delayed although now we know he is actually hearing some things.
Today was our first day at church together in a long long time. The entire family made it! We were of course late as I didn't take into account and exploding diaper happening but the point is we made it to church together. It was nice to see so many people there that wanted to know how the family and especially how Keian has been doing.
Relief Society was about listening to uplifting music and the Hymns. I have to say that the one Hymn that gets me though all of this is Oh my Father. Its comforting to know that God is there and all of this is in his hands. That no matter what happens Keian will be taken care of and is loved just as much by our Heavenly Father as he is by me and Lee.

The rest of yesterday was so long!!!! We saw our physical therapist and got a new wedge. We also saw a hand specialist in the physical therapist deprtment and she thought we should start bracing. We had braces made while waiting for our next appointment with the gastrinologist. Keian seems to be ok with them. He is to wear them only at night and only for a few ours.
We then went to the gastrinologist and she suggested that we start testing Keian's blood sugar after eating. I doubt we will find anything. She also seemed to agree with me that the NG-tube was still needed and that we shouldn't be talked into a regular G-tube by any other doctors.
The ride home from Seattle was a bit tiresome. There was a huge wreck on the freeway during rush hour. I decided just to pull over and walk around. We ended up getting home at 10pm. Needless to say I am exahsted!!!!! I think Keian is finally glad to be home, I know I am.

Yeah!!!!! Finally some good news after the long and horrible week we have had. We just finished our visit with the radiologist and doing a swallow study. Keian is no longer aspirating when he eats an ounce by mouth!!!! We still need the NG-tube however because of his reflux and how he throws up when he does eat by mouth. We found Keian gets lots of gas in his stomach from all of the gulping he does. Plus with Keain's blood sugar dropping so low sometimes it is so much safer to keep him on the NG feeding pump at night to keep his blood sugar constant. We do not need any more scares with seizures like Monday. We have 2 more appointments to go today. We are sitting and waiting for physical therapy to make a new wedge and then we see the gastrinologist to se if there is anything more they can do for his reflux.
I'm suspecting they are going to be telling me nothind different than I already know at the present time however they may change the amount of his reflux meds. We will just have to wait and see.

Today we came home from the local hospital for the second time in a week. Keain has been dealing with feeding issues all his life and things just seem to be getting worse. Last week we woke up to a 101 fever under the arm and found that Keian had a bladder infection. We also found that his blood sugar was incredibly low. After being treated for a few days and learning Keain has only one kidney, we went home and found everything to be fine for the first day. The next morning we took Lee to work and as we were walking in the door Keain threw up and withing 5 minutes started having seziures. We were back at the hospital doing more tests. His blood sugar was really low again. He was admitted and we changed his feeding schedual. So far it is working. Tomorrow we go to Children's Hopital to see the Gastrinologist and Pulmonologist. I am nervous about going over the pass by myself with him. What if something happens and I can't get help? The doctor's came up with a good solution and I think we'll be ok. He is finally home and I happy to be in my own bed again. I just hope they don't find something wrong and admitt him again up in Seattle. I will be taking along items just in case because I don't want to be stranded with nothing to wear.